Dataset Information

BRCA1/2 Variant Data-Sharing Practices.

ABSTRACT: Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing global accesses to diverse data sets.

SUBMITTER: Bollinger JM

PROVIDER: S-EPMC6748872 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Publications

BRCA1/2 Variant Data-Sharing Practices.

Bollinger Juli M JM Sanka Abhi A Dolman Lena L Liao Rachel G RG Cook-Deegan Robert R

The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20190301 1

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates s ...[more]

PMID: 30994073

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Project description:BACKGROUND: Scientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results. METHODOLOGY/PRINCIPAL FINDINGS: A total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region. CONCLUSIONS/SIGNIFICANCE: Barriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.

Project description:BackgroundAlthough the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy-an important construct that captures an individual's ability to manage their health and to engage with their health care providers-has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients' data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices.ObjectiveThis study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients.MethodsWe surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients' retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants' health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients' immediate experiences situated within their clinic visit.ResultsWe found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one's health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants' data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians.ConclusionsAlthough tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals' health literacy, empowering patients to effectively track and share their PGD is important-both technologies and health care providers can play important roles.

Dataset Information

BRCA1/2 Variant Data-Sharing Practices.

Publications

BRCA1/2 Variant Data-Sharing Practices.

Similar Datasets

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